About me! (My favourite subject!!)
My name is Steve Holt, I am 52 years old and I have aggressive primary progressive multiple sclerosis.
I am lucky in that I have a wonderful wife and 4 fantastic kids and in a way being diagnosed with this horrible, nasty, debilitating and chronic disease has made me realise just how lucky I am. Weird isn't it, but this disease certainly shows you whats important and what isn't.
After what seemed forever in numerous NHS and private hospitals in London, England with different doctors having different ideas of diagnosis, from a stroke to a brain tumour and just about everything in between, I finally persuaded my GP to give me a referral to the National Hospital for Neurology and Neuroscience in Queen Sq London.
4 months after my first appointment I was diagnosed and told "no medication and no cure."
3 years of falling over and that was it! Surely not! I'm not having that!
I was told the only definite was that I would get worse and I would end up in a wheel chair and it could be in 1 years time or 20. That is how little the experts know about ppms.
Turns out that 18 months after diagnosis I could no longer walk, no matter how hard I tried, and succumbed. Outwardly I accepted it, inside I was livid!! I was 49, never been in hospital, never been ill. Crazy.
I was told to give up work because the stress involved in my business would bring on progression, I was unable to drive, to go out on my own, watch my youngest son play rugby because if the ground was wet (and in London we do get a bit of rain,) the chair would sink in the mud. Simple things like taking a shower became a major effort, going on holiday was difficult and MS more or less caused a role reversal between my wife Carol and I. I could no longer carry shopping or cut the lawn, stupid things that everyone, me included, take for granted. MS is a major pain in the butt!!